My husband has been diagnosed with high grade Neuroendocrine Carcinoma

Hi Christina

So sorry to hear about your husband and you have had join us...

I am a High Grade NET, you can read my story on my profile. It is a very complex disease and does need a Specialist Team. 

Which hospital is your husband being treated at?

There is Specialist Charity that educates, supports and helps NET patients and their Carers. They also have a helpline if you need any advice. Look up netpatientfoundation.org

Please let me know if I can help further x

Hi Christine

I’m sorry that you find yourself here as well. I’ve read your profile - my goodness what a road you have been on so far. I hope you will continue to get positive results.

Addenbrookes is the hospital G is being treated at!! You will know it well. 

Thank you for the extra information regarding on line charities & support groups. I’ve already found Netpatient which as you as say is very informative.

G is very tired & appetite reduces each day. Lots of pain everywhere - a combination of physical & cancer pain.

I’m very grateful to you for replying to my post - it makes a difference.

Take care Christine - we’ll keep n touch.

best wishes

Christina .

Goodness it’s a small world and it does sometimes feel a lonely place for patients and their Carers.

Yes Addenbrooks have a relatively new NET team and a lovely NET Nurse so I’m sure you will get good support. Hopefully they can soon control your husbands pain which will help both of you.

I have my next CT on 29th to see what’s happening on the reduced dose...

Take care